Severe Mitral Valve Regurgitation? OI? Read this....

Sushi

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I have had mild mitral valve regurgitation for many years--I was probably born with it. Mild regurgitation is common--and particularly in the Ehlers-Danlos sub-set of patients as valves involve collagen. It usually does not progress and does not require treatment. But, sometimes it does and I recently had an echocardiogram that showed that mine had progressed to severe. My orthostatic intolerance had also slowly progressed though it wasn't clear if they were related. Most cardiologists feel that severe regurgitation requires treatment and until recently that meant open heart surgery to repair the valve.

My cardiologist referred me to one of the best valve surgeons in the country, but his recommendation was to fix the valve by accessing the heart through the femoral vein rather than open heart surgery. Part of his reasoning was that I had ME/CFS, dysautonomia and EDS and that the usual 3 month recovery from open heart surgery would likely be much longer....and possibly could lead to an overall reduction in functionality rather than a boost. The other aspect was that, though repairing the heart through the femoral vein is a relatively new approach, it has so far been extremely successful. (Mick Jagger recently had his aortic valve replaced through this technique.)

The interventional cardiologist who performed this surgical procedure on me had never operated on an ME/CFS patient with very significant OI and had no idea what effect it would have on that symptom...but the other reasons for going ahead were compelling as untreated severe regurgitation most often will lead to significant heart damage.

Before this procedure, I could only stand up for about 30 seconds and could not walk across the room. I also had marked shortness of breath. I had 5 star doctors and a 5 star hospital and everything went smoothly, though the procedure required a general anesthetic, intubation and a short in-patient stay in a monitored cardiac step-down unit.

I have waited to post about this as I knew that recovery from such an event would not be quick. It has now been nearly two months and, for me, the change is remarkable. While I still have OI if I overdo it or stand up for long periods, functionally it has been night to day. I suspect that my mitral valve regurgitation had slowly been increasing and that this had been exacerbating my OI. No more shortness of breath! I have recently begun physical therapy as the many months spent mostly bed-bound took its toll. I have also gone back to a pilates class and so far so good.

I know that not many will be in a similar position, but for any who might be, I wanted to bring this up. I am very thankful for having had this procedure. :)
 

Sushi

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The interventional cardiologist said "You just made my day" when I had my followup appointment and reported the improvement in OI. And my electrophysiologist asked me to write it up so that she could share it. Another interventional cardiologist who does a lot of these procedures posted this on Twitter:


The word is getting out! :thumbsup:
 
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raghav

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@Sushi great news ! Did they repair your valve ? How ? I am curious because I too have MVPS but no regurgitation till now. But my neurologist says most epileptic patients have this disorder and this is a constant source of argument between cardiologists and neurologists. Cardiologists say mitral valve prolapse does not have anything to do with triggering epilepsy but neurologists say if the rhythm of blood supply to the brain is affected (like tripping a person who is running and then claiming that he fell because he ran and not because of tripping) then it does trigger epilepsy in many cases.

Did they repair the chordae ? Can you elaborate on the procedure ? Thanks.
 

taniaaust1

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great news for you :) .

I have had mild mitral valve regurgitation for many years--I was probably born with it
or maybe not. Have you ever read the stuff by Dr Cheney about how many who have ME/CFS develop that hole in the heart which opens and shuts at times (from what I remember, he thought it may be some kind of compensatory issue to other things going on in us). Mitral valve regurgitation is a sign that someone may have this issue with the hole which may open up at times. (I forget now what that is called)

I have had three intensive rounds of heart tests over the years (with the same tests being done) due to my collapses (at times unconscious) and the first two times these tests were done on me, they showed up no heart issues at all.

The third time (after I'd had ME long term).. the tests showed I had a leaky mitral value and a leaky other heart value (I forget which). The cardiologist told me I was probably born with this so hence would not get worst (she was unaware of my previous heart tests over the years at a different place not showing any issues). So I think I was not born with it seeing these leaking values did not up on previous testing so I think in my case it is a direct consequence of my ME.

It was then on researching the leaking valves I had and trying to research on what can often cause (other than just being born like that).. I came across that very same thing condition with the hole which Dr Cheney talks about in ME which is not always easy to detect as it is not always open. So I've been left thinking that mine may get worst too. (It was just mild with the two valves when it was found)
 

Chris

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@Sushi--great news! I have had two open heart surgeries-the first to replace my then newly "severely stenotic" aortic valve, back in 2004 (pre ME days), the second in 2017 to replace that failed valve with another--both valves bioprosthetics. Now my mitral valve has moved from "mild" regurgitation to "moderate," and I may be facing more trouble (mind you, I am now 86). Great to hear that this new much less radical procedure can actually work--I may need it too one of these days!
 

Sushi

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Did they repair your valve ? How ? I am curious because I too have MVPS but no regurgitation till now.
Yes, they repaired the valve. Mitral valve prolapse does not always mean regurgitation and I don’t believe they ever do a repair unless there is severe regurgitation. The insurance requirements are stringent. I went from mild, to moderate to severe over a period of many, many years. It is the severe level of regurgitation that causes the problems.
Did they repair the chordae ? Can you elaborate on the procedure ? Thanks.
Yes, they repaired the chordae with a device called a MitraClip. Not all mitral valve problems are suitable for this kind of repair, but mine was. If you are interested in the procedure, here is a good description: https://myheart.net/articles/mitraclip-procedure/
 
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Sushi

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Mitral valve regurgitation is a sign that someone may have this issue with the hole which may open up at times. (I forget now what that is called)
It is called a PFO ( patent foramen ovale) Everyone has this before birth but it is meant to close afterward. Occasionally it doesn’t or reopens. I did not have this—it was looked for carefully at three different heart centers.
So I've been left thinking that mine may get worst too. (It was just mild with the two valves when it was found)
It usually does not progress from mild but it is good to have a cardiologist check it regularly with an echocardiogram—that is how mine was caught. I actually had two echocardiograms at different medical centers and a TEE-transesophogeal echocardiogram where the imaging device is threaded down your throat so that it is right behind the heart—the best position to get clear images.
 
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Sushi

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@Sushi--great news! I have had two open heart surgeries-the first to replace my then newly "severely stenotic" aortic valve, back in 2004 (pre ME days), the second in 2017 to replace that failed valve with another--both valves bioprosthetics. Now my mitral valve has moved from "mild" regurgitation to "moderate," and I may be facing more trouble (mind you, I am now 86). Great to hear that this new much less radical procedure can actually work--I may need it too one of these days!
Hi Chris! Well, you have had a history with this and know what open heart surgery is like. The good news is that valve surgery techniques are progressing rapidly. I even received a “new and improved” MitraClip even though the fist model was only FDA improved in 2013. The great thing about these procedures done through the femoral vein is that they are done on a beating heart—no need for a heart lung machine. This makes age less of a factor. Good luck with this.

Fun fact: whenever The Rolling Stones perform now, there is a cardiologist in the wings, just in case Mick Jagger has a problem.
 
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